#hawky and fibro

[hawkelf]

I started turning off half my masking when I go to my GP. As defense. This person does not get to see my emotional responses to things, that is not work I'm going to put in here; I have specialists who get that. As a treat. As a reward. For not constantly telling me I need to exercise more or try yoga or that my pain is well managed or I need to go to the weight loss clinic or "you have this diagnosis now but since we don't see any symptoms it doesn't really matter" when symptoms are how I 'earned' the right to be tested after dropping the topic eight years ago or suggesting I drop a pain med or denying a recommendation to another specialist bc I'm not presenting a symptom three months after I schedule an appointment or asking me if my pain levels are accurate or hounding me to stop using a cane or gatekeeping access to the parking placard that helps me go do things or suggesting I see a dietician or denying me a test a specialist told me I need or needing a psych to send them a note just so they'll stop telling me to exercise every goddamn time like it's the answer to everything and I don't have an active (for my diagnoses) lifestyle or--

My GP has not earned that trust and effort. I will save my emotional reaction for later. For me. For when I have time and space to process the information.

I will smile at my other doctors and make worried faces while considering options with my other doctors. As a treat. For them.

#hawky and fibro #hawky and eds #hawky and anxiety #hawky and ill health

[hawkelf]

if I was healthy, I'd feel invincible, I'd be unstoppable, I'd end up disabled (inevitable)

#hawky and fibro #fms was my first diagnosis so it's the oldest health tag I've got and will prob stay my main physical health tag #even if what my main diagnosis is now is debatable

[hawkelf]

Weirdly dizzy and 3 more hours to go

#hawky and fibro #i guess sure why not

[hawkelf]

Lately I've been using Tamora Pierce's description of Daja magically drawing hot metal through a hole to make wire, to help myself visualize physically relaxing and drawing pain from my body.

I'm terrible at meditation, as someone with chronic pain completely not tolerant of suggestions I use it to manage my condition, but I've been generally loving and using her Circle of Magic books for light meditating since I was probably the age of the characters. Mostly for insomnia, and rage, but this is a pleasant addition.

#tamora pierce #chronic pain #fibromyalgia #hawky and fibro

[hawkelf]

Told my physical therapist that I'm flaring and fatigued today. Pain worst in the area we're working on. He mentioned manual treatment/manipulation which would have helped.

Did not get that. Got pushed extra hard in exercises "to see how your body will handle it in the next 48 hours," to the point I had to take extra breaks and be given water in a masked environment. He mentioned that he'd deviated from his plan from the beginning of the appt, but like. assdfghf.

Dude. I walk. To pt. And work manual, physical jobs pt is already screwing with. Do not fucking. Wtf.

Anyway. Pain level currently tears and muscle spasms.

Cool.

#hawky and fibro

[hawkelf]

elderly people will mention to me (bc I spend 75% of my social time surrounded by the elderly, as do all 31yos) that they use their walking canes for dizziness, or that’s why they no longer drive, and I’ve started to hesitate before I say “same” bc  lie my daytime dizzy and vertigo has been less prevalent lately?

but like apparently I just forget the nightly silent game, a secret race to get to bed before the world moves around me like a 1995 racing game and I a lonely megatruck, careening through life whether I’m moving or not.

#hawky and fibro #my new chiro is... helping? #but dear god #also the fact that chiro is helping this problem is alarming itself

[hawkelf]

First time I flew in ten years, and thing I got most excited about? This dorm-size accessible stall at the Minneapolis airport. (Not pictured: it had a plug-in, y’all)

#priorities #cripple punk #hawky and fibro #fibro and crafts

[hawkelf]

very occasionally I catch glimpses of who I am under all the medication and pain and fatigue, and there are parts that I like and parts that I don’t, but I miss the shit out of that person

#hawky and fibro

[hawkelf]

well that felt a lot like my hip going back into place 

which if that’s the case

I am glad bc mb the pain will calm down and I can regain some life and energy and movement

I am mad bc I was at a pain clinic a month ago that swore there was nothing wrong with my hip, when it’s been fucked for like two months or more

I hope to god it doesn’t fucking do this again bc I don’t have any doctors who will take this hip seriously but it’s majorly impacting my energy levels and ability to work

I swear this better have been the problem I need to feel better

no spinning today, just in case

#hawky and fibro

[hawkelf]

maybe I have spent this morning mostly working on my hip, but maybe regaining movement and lessening pain in a joint that’s been locked up, malfunctioning, and agonizing for over a month isn’t a small thing that I should be guilty about focusing a Sunday morning on just because I’m home alone and could hypothetically be doing other things while in pain because my hip would still be fucked

and I did a couple other things, I called the electric company, rebooted the router, and went to the bank. that’s. a few things.

my hip is important. the day’s not half done. I’m doing fine.

#I really need to check if topiramate has impact on anxiety #or if mine's just spiking coincidental to my meds being wonky rn #hawky and fibro #hawky is an adult #hawky and anxiety

[hawkelf]

Something I continue to fail at is resting.

Something I continue to fail to describe is how difficult it is to stop. I have anxiety, and chronic pain, and I am exhausted all the time, and it is extremely, extremely, extremely easy for me to injure myself if I work too hard. 

If I push harder. If I nudge my limits.

I do it all the time. 

I live in isolation. Not true; I live with people, but on average I’d say I spend maybe an hour a day physically in the presence of people, right now. So, in a way, I live in isolation. This is no one’s fault.

I have a cat. She helps a lot.

I have a business. I am a bookbinder, and a dye gardener, and a yarn spinner, and a printmaker. I also do my packaging, book keeping, graphic design, tech work, shipping, and everything else. 

I have a chronic illness. I’m disabled. As I said, I’m exhausted all the time, it is extremely, extremely easy for me to injure myself if I work too hard. It is not good for me to do things repetitively for more than half an hour at a time, or to sit or stand in one position for more than half an hour at a time.

Any artist or craftsperson, or person who runs a one-person company will tell you that it is more than a full-time job. It easily can take over your life. In fact, the culture encourages it, basically necessitates it. It is a twelve-hour job, a seven-day job. Love what you do, live what you do kind of thing, right? Right.

I love what I do. I live what I do. I love it like air. It hurts my body so much.

I live in isolation. It happens to a lot of people with chronic illnesses or disabilities, but it’s not something I can entirely dodge blame for. 

I have an avoidant personality disorder. I am terrified of social interactions. My brain works in a very, very clever way that makes it very easy to avoid things that it decides are bad. Bad things are the world stops and shuts down bad. But my brain is very clever, and it can work circuits to avoid these things, even circuits around itself, so for years as I thought I was just cutting out things that were interfering with my work, I was cutting out social life. I was cutting out me. 

So when the people in my life had less time to interact directly with me, all I had left was work. Which I love. I love work, and I can lose myself in it for hours and hours and hours.

But trying to turn myself into my work isn’t working, because my body just will not let me. My brain may be suited for it, but my body’s not. 

But along the way, I’ve lost the ability to stop. It took me years to train myself into periods of rest, and then somewhere along the way I let it go. My brain threw it out as something bad, that needed to be avoided. Something that my work (and I, I am my work) can’t recover from. 

So I keep moving. I keep working. Things happen. Usually odd things, or poor to mediocre things, or things that don’t make sense or that I don’t remember, or that injure me in some small way. Often a combination of all of those things. But things happening is a form of progress, to some part of my brain.

And this is ableism. This is me being terrified to say no, or slow down, or stop. Show weakness, show my illness as more than just a cane everyone I work with voices concern over (so, so much concern). If I don’t keep up with them, they won’t see me as their equal. And they won’t give me a shot. This is me trying to keep up with an able world that I can’t keep up with, and failing terribly, and my very dysfunctional brain building very broken coping mechanisms that my wobbly body can’t begin to maintain. 

I am medicated, I am seeing doctors, for many things (this too takes up mental and physical resources I don’t want to spare from the business). But a personality disorder needs a therapist - AvPD needs a clever one - and no insurance I qualify for allows for that. I’m trying to work on my body. Make it stronger. Give it better medicine. I’m trying to follow the avenues medicine is giving me; mostly physical therapy and its diminishing returns. 

A somewhat poisonous situation; I do the work they give me, and it makes me literally too tired and inept to work, putting me behind, making me anxious, wearing at my brain. And my funds, the precious funds that pay for the physical therapy. 

Did I mention that I started this business to fund the medicine? That’s always there, in the back of my mind, too. 

And then it repeats.

#this was going to be meta #and then it triggered a bit of a breakdown #so now it's something entirely different #hawky and fibro #hawky and avpd #hawky and anxiety #hawky and depression #internalized ableism #fibro and crafts #my business my brain and my body are fighting #idk what to tag it

[hawkelf]

peripheral neuropathy: still technically not a goddamn diagnosis

/flop

#hawky and fibro

[hawkelf]

#hawky and fibro #hawky and the weird nerve thing #reminder to self #guess who just got twenty tests back with zero results

[hawkelf]

brb my pelvis is yeeting my leg again lol

#hawky and fibro #back on my way to a different diagnosis #again

[hawkelf]

I love ice packs, I love ice packs enough to have a preferred brand, I would genuinely accept ice packs as a birthday present and probably cry from excitement what have I become

#hawky and fibro #hawky pays for pt

[hawkelf]

got my first decent sleep this week last night

my stomach, this morning: We 're up, lads. Get to it.

#i'll spare you details #hawky and fibro #I'd go back to bed but I'm so grossly behind on work that is nnnnot an option